Our roller coaster ride with neuroendocrine cancer, parenting, and life.

Chapter 35: A Dazzle of Zebras

Did you know a group of zebras is called a DAZZLE? Yesterday we had the chance to hear the #1 US expert on neuroendocrine cancer. Dr. Eric Liu practices in Denver, CO but was speaking in Raleigh last night so we didn’t want to miss it! Fifty or so people (about 25 zebras + guests) were crammed into a dining room at a Hampton Inn in Raleigh. You may recall that NETs patients call themselves zebras because NETs is such a unique cancer (“when you hear hoof beats you think of horses, but maybe it’s not?”)*. Did you know that there are about 80 different types of neuroendocrine cancers? Wow. Dr. Liu said there were probably 200,000 NETs patients in the US. If you consider that there are expected to be over 330,000 breast cancer diagnoses just this year, it gives perspective on how unusual NETs is.

Last night was quite a gathering. Dr. Liu spoke about his medical journey that led him along the path to become the foremost NETs expert in the U.S. In addition to being a brilliant physician and surgical oncologist, he is also a caring and funny human – we liked him immediately. Then we heard from Gil Schaenzle, who lost her daughter Anna in 2017 to one of the more aggressive forms of NETs. Gil is now walking all of the US National Parks in memory of Anna, to raise awareness of NETs cancer and raise money for the Healing NET Foundation. Finally, after dinner, Dr. Liu spoke about the latest treatments and upcoming research for NETs, as well as answered questions from the crowd. It was hugely informative and comforting to be with a group of people from around NC (and a few from TN and VA) that were also dealing with this disease. Don was the “youngest” zebra there (diagnosed only about a year ago) and the “oldest” was someone who has been living with NETs for 12 years. These people were all ages, all genders, all races … all living with this strange and mysterious cancer. Talk about dazzle!

Don’s surgery was a year ago, on June 14, 2017. You can read about it here. He still sees his local oncologist, Dr. F, for the monthly sandostatin shots and sees Dr. M, the NETs specialist at Duke, quarterly for a scan and visit. This could change from quarterly to every 6 months – TBD. We are both joyful and grateful that the year has flown by and Don is feeling good. We expect this to continue for many years.

Sources:
* A “hoofbeats” example – Don’s NETs appeared as tumors on his liver. At first glance, one might think it was liver cancer, but it was not. It was neuroendocrine tumors on his liver, which originated from his small bowel. This is just one of the 80 different types of NETs.
* http://www.breastcancer.org/symptoms/understand_bc/statistics
* To learn more, check out these Ten Facts on NET.